Cerebal Palsy support

Chat with others about dyspraxia and share your experiences.

Cerebal Palsy support

Postby Super Nekou » Tue Dec 14, 2010 9:38 pm

I know this probably isnt the correct place for this but I'm struggling to find any help online anywhere about CP and other people's experiences with the condition. I've just recently accepted I have this despite being diagnosed with the spastic diplegia form of the condition when I was 13 by physiotherapists and occupational therapy [doctors did not agree however they never ever tested my legs.].
I have it mildly, experiencing pain from walking after an hour or so of being out. It quickly deteriorates and I have to sit down and I struggle to walk after.

I have reports of being diagnosed, yet with no doctor agreeing, I'm wondering if I would qualify for DLA? I've looked at the form and though I dont have a carer or need support walking, I cannot support myself fully independently due to my dyspraxia also and get a lot of help from my boyfriend and other family members. I'm also on JSA, and am thinking about discussing this when I next go to see them, however they're pretty useless and will probably tell me to ring up which is just too stressful.

I appreciate any information and even any links would be fantastic.
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Re: Cerebal Palsy support

Postby carebear15 » Fri Dec 17, 2010 3:13 pm

I have cp also and can't find any place too.
I have mild case. it I have mild spastic diplegic cerebral palsy.
and more other special needs . email me anytime on Jar2021@hotmail.com

I was diagnosed in July 2010 so i still new at this.
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Re: Cerebal Palsy support

Postby carebear15 » Fri Dec 17, 2010 3:35 pm

I will take any help that this place can give me. I sometime like to use a wheel chair because my legs get tired.

If it deteriates and then it might not be cerebral palsy and something else but i am not a doctor so first thing orthopedic said was i have a muscular problem and my muscles don't work. that they are something i have to remember what he said the orthopedic said cp and the neurologist said cp and the doctor said cp.

I have a diagnosis and have mild to moderate mental retardation.
mild to moderate hearing loss in the right ear.
I have moderate to severe hearing loss in the left ear.
My hearing kept getting worse.
It makes me wonder if it is a progressive hearing loss.

I had on reports from job coach mild motor disorder which i disagree.
I always had alot of signs and symptoms like colic till age 3 1/2 years old which is strange which nobody heard of it.
Limited fine motor skills.
poor coordination.
at this time, noted low overall function (i.e. decreased balance, decreased trunk-pelvis dissociation, and bilateral ankle pronation). my mom said told that i have always been slow and has weak ankles.


TESTING

Bruininks-oseretsky Test of Motor Proficiency was performed 12/11/92.

The scores were as follows:

GROSS MOTOR SUBTESTS AGE EQUIVALENCY
years-months
Running Speed and Agility (6) 5 - 11
Balance (15) 4 - 11
Bilateral Coordination (0) 4 - 2
Strength (3) 4 - 5
Upper Limb Coordination (8) 5 - 5
Gross Motor Composite 3 - 0






ASSESSMENT AND RECOMMENDATIONS

she scored well below chronological age on all portions of the Gross Motor subtests. Her gross motor composite score of 3.0 is 1.2 years less than the lowest age equivalents corresponding to subtest point scores from the Bruininks-oseretsky. Another assessment scale in addition to or in place of the Bruininks may be helpful for future assessments.
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Re: Cerebal Palsy support

Postby Super Nekou » Sat Dec 18, 2010 9:11 pm

carebear15 wrote:I will take any help that this place can give me. I sometime like to use a wheel chair because my legs get tired.

If it deteriates and then it might not be cerebral palsy and something else but i am not a doctor so first thing orthopedic said was i have a muscular problem and my muscles don't work. that they are something i have to remember what he said the orthopedic said cp and the neurologist said cp and the doctor said cp.

I have a diagnosis and have mild to moderate mental retardation.
mild to moderate hearing loss in the right ear.
I have moderate to severe hearing loss in the left ear.
My hearing kept getting worse.
It makes me wonder if it is a progressive hearing loss.

I had on reports from job coach mild motor disorder which i disagree.
I always had alot of signs and symptoms like colic till age 3 1/2 years old which is strange which nobody heard of it.
Limited fine motor skills.
poor coordination.
at this time, noted low overall function (i.e. decreased balance, decreased trunk-pelvis dissociation, and bilateral ankle pronation). my mom said told that i have always been slow and has weak ankles.


TESTING

Bruininks-oseretsky Test of Motor Proficiency was performed 12/11/92.

The scores were as follows:

GROSS MOTOR SUBTESTS AGE EQUIVALENCY
years-months
Running Speed and Agility (6) 5 - 11
Balance (15) 4 - 11
Bilateral Coordination (0) 4 - 2
Strength (3) 4 - 5
Upper Limb Coordination (8) 5 - 5
Gross Motor Composite 3 - 0






ASSESSMENT AND RECOMMENDATIONS

she scored well below chronological age on all portions of the Gross Motor subtests. Her gross motor composite score of 3.0 is 1.2 years less than the lowest age equivalents corresponding to subtest point scores from the Bruininks-oseretsky. Another assessment scale in addition to or in place of the Bruininks may be helpful for future assessments.


Haha, your motor proficiency test took place on my second birthday. Unless you're using American dates, as I see you're american, in which it took place a month after..anyway..everyone said I had CP and tight hamstrings but the doctors that examined me did not agree despite a lame examination of my legs [saying they dont touch the bed normally but never giving excuse for my limited mobility]. I also have poor balance and fine motor control and I'm always the slow walker, lagging behind. I was told I may need a wheelchair in future due to the pain I experience whilst walking, though as I stopped attending physiotherapy after they wanted to break my legs and see if stretching the bone or something would help, I have no idea what the current situation is on that, if I need one or not.

I appear to have rambled there..I have no idea if I even have a point or not. D:
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